Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 Lois Our thoughts and prayers are with you. Hang in there. It is so hard to feel so helpless. Just give Leighann love and love and love. rosy, mum to max Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 I'm asking for you guys to pray for my Leighann,please. Shes crashing, and all I can do is watch. Lois > [Original Message] > > To: <Mito > > Date: 2/15/2005 9:04:39 PM > Subject: Re: fresh muscle biopsies > > > > We waited more than a year to get into Cleveland clininc to see Cohen. We > then were sent to Parikh, a fellow. It was not pretty. He said he would do the > biopsy and then didn't. He said things like is in the 50th percentile for > height for a five year old. She was 6 1/2. He said he did testing he did not do. > He sent paperwork to docs we had not seen in years---against my express > wishes. He never opened the films of MRIs and CTs even though he asked > for them. > > Atlanta is close to you. Schoffner is at Children's Health Care of Atlanta. They > don't take medicaid. They also require written preapproval by insurance and > copays paid in advance. It would probably be quicker to get a biopsy in > Atlanta. It takes about four months to get the report back. > > If you try Cleveland Clinic, you might be better off finding a great mito doc who > will ask Cohen to order specific testing done (ex. Whiteman at Mayo). > > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 I'm so sorry to hear that she's not doing well. I'll keep your family in my thoughts. I know you can find the strength to get through this tough time. I'm asking for you guys to pray for my Leighann,please. Shes crashing, and all I can do is watch. Lois > [Original Message] > > To: <Mito > > Date: 2/15/2005 9:04:39 PM > Subject: Re: fresh muscle biopsies > > > > We waited more than a year to get into Cleveland clininc to see Cohen. We > then were sent to Parikh, a fellow. It was not pretty. He said he would do the > biopsy and then didn't. He said things like is in the 50th percentile for > height for a five year old. She was 6 1/2. He said he did testing he did not do. > He sent paperwork to docs we had not seen in years---against my express > wishes. He never opened the films of MRIs and CTs even though he asked > for them. > > Atlanta is close to you. Schoffner is at Children's Health Care of Atlanta. They > don't take medicaid. They also require written preapproval by insurance and > copays paid in advance. It would probably be quicker to get a biopsy in > Atlanta. It takes about four months to get the report back. > > If you try Cleveland Clinic, you might be better off finding a great mito doc who > will ask Cohen to order specific testing done (ex. Whiteman at Mayo). > > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 I am sorry to hear she isn't doing well. What are you seeing? I understand the helpless feeling. It can be so frustrating to not be able to do anything to stop the crash (other than allowing them to rest plenty, provide lots of fluids, supplements, and etc.). Hopefully it will be a short one and she will be feeling better soon. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Re: fresh muscle biopsies > > > > > > > > We waited more than a year to get into Cleveland clininc to see Cohen. > > We > > then were sent to Parikh, a fellow. It was not pretty. He said he would > do the > > biopsy and then didn't. He said things like is in the 50th > percentile for > > height for a five year old. She was 6 1/2. He said he did testing he did > not do. > > He sent paperwork to docs we had not seen in years---against my express > > wishes. He never opened the films of MRIs and CTs even though he asked > > for them. > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > Atlanta. They > > don't take medicaid. They also require written preapproval by insurance > and > > copays paid in advance. It would probably be quicker to get a biopsy in > > Atlanta. It takes about four months to get the report back. > > > > If you try Cleveland Clinic, you might be better off finding a great > > mito > doc who > > will ask Cohen to order specific testing done (ex. Whiteman at > Mayo). > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 , Thanks so much! It's appreciated. Re: fresh muscle biopsies>>>> We waited more than a year to get into Cleveland clininc to see Cohen. We> then were sent to Parikh, a fellow. It was not pretty. He said he woulddo the> biopsy and then didn't. He said things like is in the 50thpercentile for> height for a five year old. She was 6 1/2. He said he did testing he didnot do.> He sent paperwork to docs we had not seen in years---against my express> wishes. He never opened the films of MRIs and CTs even though he asked> for them.>> Atlanta is close to you. Schoffner is at Children's Health Care ofAtlanta. They> don't take medicaid. They also require written preapproval by insuranceand> copays paid in advance. It would probably be quicker to get a biopsy in> Atlanta. It takes about four months to get the report back.>> If you try Cleveland Clinic, you might be better off finding a great mitodoc who> will ask Cohen to order specific testing done (ex. Whiteman atMayo).>> >>>>>>>>> Please contact mito-owner with any problems or questions.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Darla, Thank you. She's caught some nasty stomach bug. Sounds minor, but it's nasty. She's started having mild seizures so far. She can't keep anything down, won't eat, ( except for a couple of muffins, better than nothing), I can get between 4 to 8 ounces of pedialyte in her per day, most of it comes back one end or the other. She's getting weaker, sleeping almost all the time, and when she's awake she wants to be held. We took her to the ER, they tried to start an IV, couldn't because they said she was too dehydrated, and sent us to her doctors office. They gave her zofran(I think thats right) to stop the vomiting, kept her in the office 2 hours, kept giving her pedialyte and since she kept it down sent us home. Sorry to go on so long, but if I remember right you've dealt with the dehydration. I need advice. I've never dealt with it before, when do you know how far it can go? Shes had 1 wet diaper today and 1 yesturday. I can see shes getting worse. Thanks so much. I see where this path is going, maybe you have some advice to help her from getting more dehydrated. When she gets down like this she goes into respiratory failure with the seizures because they're so severe she can't get out of it on her own. Shes already woke up once in a seizure gasping for air, I was able to get her out of it, but I know if I can't get her system up they're going to get worse. Anyway, thanks for your help, any advice is appreciated. Lois > [Original Message] > > To: <Mito > > Date: 3/6/2005 12:25:37 AM > Subject: Re: Leighann's crashing > > > I am sorry to hear she isn't doing well. What are you seeing? I > understand the helpless feeling. It can be so frustrating to not be able to > do anything to stop the crash (other than allowing them to rest plenty, > provide lots of fluids, supplements, and etc.). Hopefully it will be a > short one and she will be feeling better soon. > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see > a photo look into what Mito looks like > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > gastric emptying issues... > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > hypertonicity, migraines, possible seizures, dumping syndrome, iron > deficiency, ... > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > Re: fresh muscle biopsies > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to see Cohen. > > > We > > > then were sent to Parikh, a fellow. It was not pretty. He said he would > > do the > > > biopsy and then didn't. He said things like is in the 50th > > percentile for > > > height for a five year old. She was 6 1/2. He said he did testing he did > > not do. > > > He sent paperwork to docs we had not seen in years---against my express > > > wishes. He never opened the films of MRIs and CTs even though he asked > > > for them. > > > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > > Atlanta. They > > > don't take medicaid. They also require written preapproval by insurance > > and > > > copays paid in advance. It would probably be quicker to get a biopsy in > > > Atlanta. It takes about four months to get the report back. > > > > > > If you try Cleveland Clinic, you might be better off finding a great > > > mito > > doc who > > > will ask Cohen to order specific testing done (ex. Whiteman at > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 Rosy, Thanks for all. Leighann will always get so much love, I feel so fortunate to be her mom. She's truly my heart. Thanks again. Lois Re: Leighann's crashing Lois Our thoughts and prayers are with you. Hang in there. It is so hard to feel so helpless. Just give Leighann love and love and love. rosy, mum to maxPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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